Gustavo Serafini is an American businessman, podcast host and has a lifelong disability proximal femoral focal deficiency (PFFD).
Despite growing up and living on the other side of the world Peta and Gustavo have a very similar outlook on life.
From childhood, Gustavo wanted to prove he always could. Proving people wrong who judged him based on his disability. Resulting in him striving to succeed and helping other disabled people to do the same.
You can listen to Gustavo's podcast The Enabled Podcast here
Follow The Enabled Disabled Podcast on Facebook
You can ask Peta a question for a future episode of the podcast via:
Instagram @petahooke
The website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:03] Hello and welcome to the I Can't Stand podcast, the podcast, answering your questions about what life is like when you have a disability. This week, I'm so pleased to present this interview for you. I had a great chat with Gustavo Serafini. Gustavo has a disability, and he lives in Florida in the US. Gustavo also has his own podcast. It's called the enabled disabled. I've actually been on his show and it was such a great chat, so I will link his podcast in the description. So that any further ado, let's get into it.
Gustavo [00:00:57] Sure. My name is Gustavo Serafini. I live in Fort Lauderdale, Florida. I am an entrepreneur and a podcaster. And I was born with a rare physical disability called PFFD. It's basically a shortening of the femur, and my right hip is also fused. So I wear a like a custom prosthetic on my right leg and a brace on my left, and I was also born just with my left arm.
Peta [00:01:32] Do you be yourself as a disability advocate?
Gustavo [00:01:36] I guess it depends on how you define disability advocate. Like, I'm not involved politically, I'm not involved with legislation changes. What I want to do is. Change people's perceptions of what it means to live with a disability and in that in that way, yes, I advocate for myself every day.
Peta [00:01:58] And that's something we have in common, Gustavo. I have no interest really in being in politics, but I really enjoy building the community around me that I have built so far and getting people to, you know, truly understand or have a better picture of what it's like to have a disability because there's so many stereotypes that are still in society today. What you do, I think it's really important.
Gustavo [00:02:24] Absolutely. It's it's part of my part of my mission, and I feel a responsibility to change people's perceptions of what it means to have a disability to, I think, just just in something very simple of just holding a conversation or playing a game together, playing a sport, whatever that may be. You give people the opportunity to see you in a in a way that breaks down those stereotypes and breaks down the perception of, you know, what I'm capable of doing and how I'm living my life and who I am as a person. There is so much. Untapped potential in the disability community. I think because I've always wanted to test my own limits and understand what it is that I'm capable of, I want to bring that out in other people. And so the podcast is my way, my way of sharing other people's stories and saying, look, maybe, maybe it's so difficult right now that the only thing on your mind is to just get through the day, and that's OK. But where can you? Can we build from that? Can we make changes to that? Can you? Can you explore what it means to be alive and to and to contribute something, whatever that is, even if it's just one thing in one day?
Peta [00:03:55] Has your relationship to yourself and your disability changed? What's that process been like for you?
Gustavo [00:04:02] I've always had a good circle of close friends, and I could talk about my vulnerabilities, my insecurities without judgement, that helped tremendously. I think there's a part of me that always feels even to this day, a sense of. Awkwardness whenever I walk into a room full of people who I don't know or going to a restaurant or the grocery store, but. I'm fairly comfortable right now with who I am as a human being, and if somebody wants to judge me, that's their problem. That's not my problem. If it's somebody I care about or somebody who I'd like to have a connexion with or a relationship with, then I know I know how to break down those preconceptions as long as they give me the opportunity to do so. There is no such thing for me as attaining some state of perfect understanding of myself or perfect comfort level with myself. But what I do find is the more that I put myself into those awkward situations, the better I get at feeling comfortable and having self-confidence and accepting who I am.
Peta [00:05:26] Because of my disability, I feel like I am a lot more open and willing to be a lot more vulnerable, particularly with close friends and people that I love, which for me has resulted in a very close but quite big group of friends. Do you do you think your disability has helped you have a bigger social network?
Gustavo [00:05:54] I think because I moved around so much growing up and I don't live where I grew up, like, I'm nowhere near there and everybody kind of from university and graduate school, we all went to different places throughout the world. It became more difficult to stay in touch with as many people.
Peta [00:06:19] That's really interesting in the fact that you moved around quite a lot when you were younger. You obviously had to re-establish social friendships and explain your disability over and over to more people. How has that impacted you and influenced the way you view yourself and other people in relation to your disability?
Gustavo [00:06:42] Definitely wasn't easy moving schools like every year or every two years if I was lucky. It ultimately, I think, gave me the confidence that if I did it once, I could do it again and then I could do it again and I could do it again. So ultimately it was a confidence builder and it helped me adapt faster to new situations.
Peta [00:07:04] I see a lot of similarities between us, like we're both very resilient. We both want to prove to other people that we have full and fulfilling lives. And I think that is pretty. Reflective, when you think about, you know, how much you've achieved both academically and professionally, Gustavo. Do you think that element of needing to, for lack of a better word, prove to people that you're capable because of your disability has pushed you forward?
Gustavo [00:07:42] For better or worse, yes. I was very competitive growing up, and I think a lot of that came from my parents, but of that, you know, if you want to be something in life, if you want to do something with your life, you're going to have to fight for it. You're going to have to fight more for it than most people. So I definitely picked up that drive. I'll tell it to you in this story that I haven't shared with anybody yet, so when I was in sixth grade, I used to play video games. I enjoyed video games at the time that was the original Nintendo and I was at. I was at a birthday party. My friends there knew I could play and knew I was good, but there were some kids there who I didn't know. And one of them said, You can't play video game. You only have one arm. And I said, OK, let's play. How about that? Let's play. And I destroyed him. And before the game was over, he turned in, he said to me, I was wrong, you're really good, you can play video games. Once I had that acceptance, once I had that, I could prove that I belonged. Then we were all good. It was back to, you know, let's be friends. Let's be cool. Let's hang out and have fun.
Peta [00:09:00] So what do you wish people better understood about your disability or disability in general?
Gustavo [00:09:10] I wish people just took more time to not have so much certainty about. What they see, like, don't judge me by what you first see your first impression. Get to know me as a person. Just take a little bit of time and get to know me or just take a little bit of time. Just get outside of your head for two seconds and say, Hmm, you know, I wonder what it's like for this person. Why do I think that it's so bad? Why do I just because it looks a little bit different or a lot different? I just wish people could just be a little bit more self aware and and try to understand. My experience and other people's experience and see how much, again, potential and ability and variations and perspectives that we have that they can learn from. I think that those are the biggest things that irritate me, and I could see it with kids. Just like I can see it with adults. There was always a group of kids at every school, no matter what. That wouldn't accept me, that would stay away or that would be awkward or disrespectful. And then there were the other kids that didn't that were curious, open minded, wanted to learn. And those were the people that I was always drawn to and I could. I could find them very easily, it was very easy to pick them out.
Peta [00:10:42] You know, kids have no perception of disability, really, until they're taught otherwise. Right. Disability isn't a negative until they're taught that it's a negative from their parents or whoever. So what advice would you give parents to educate their children to be open minded towards disability? How do you think children should approach you? How should parents teach their children about disability?
Gustavo [00:11:14] I think curiosity and open mindedness and respect. I mean, shouldn't we approach everyone that way? I know I know that here in the United States, at least in many places. In the circles that I grew up in, at least. There was so much competition, there was so much judgement of other people with or without disabilities. Open your minds. Be respectful. Be curious. You can learn so much and take and grow so much.
Peta [00:11:51] So why do you think people with disabilities are othered? What do you what are the elements? Do you think that really foster that negative environment and you can talk from like a specific US example or you can talk globally? I don't mind, but I'm really interested in the factors that you think cause people with disabilities to be othered.
Gustavo [00:12:17] I don't I think it's difficult to speak for other people with disabilities in this respect. So from my perspective, in my experience. I move differently than most people, so I can see that there's a sense of there's a sense of awkwardness, there's a sense of like they have to get used to me. And I think they haven't experienced that before, probably in their lives. They've never seen someone. With my disability, and so some people react and say, are you in pain? No, I'm not, you know, or I might be, but not because right not because of that, or they may say. That looks really difficult to go up those stairs like that must be really tough for you. There's the lack of understanding of what my experience is actually like and that that awkwardness, I think in their heads, they think. If I moved like that, I would be in pain or if I move like that. That would be difficult, I can't imagine, you know, not not being able to run up this flight of stairs or or, you know, jump off, jump three feet up in the air or whatever the case may be. They see it as taking away something that they already have. That's my impression of it. A lot of people knew who Stephen Hawking was right, and a lot of people saw how brilliant he was. But the narrative around Stephen Hawking was still he lost. Right? He lost his. All of these physical abilities over time, it was a terrible thing. I wouldn't want to be in that position. So I think that there's a deeper there's a deeper mindset and a deeper historic equation of disability as. Less than because it appears like so much of it is equated with loss or it's disease, or it's some condition that prevents you from doing what you used to be able to do. That's that's I think that that's part of the equation. In some, in most ways or in a lot of important ways, it's just like everybody else's life. Every everybody suffers, everybody goes through good times, difficult times. Everybody has experienced loss. Everybody has experienced death, everybody's experience, something something difficult, right? So if we can, if we can just make disability a piece of the puzzle rather than defining the whole the whole pie, I think that that would be a huge win.
Peta [00:15:16] And I think a lot of that has to do well, at least for me, has to do with how we're defined by the medical system as well and how your parents when you're first given a diagnosis. For those of us who are born with our disabilities, it really does start to. Predetermine how we're meant to view our lives, right? You know, your disability is quite rare. How? With having a rare disability, how did that make you feel as a child?
Gustavo [00:15:52] It made me feel. Definitely different. I think I think I ran away from it as much as I could as a child, right, I knew that I I knew that it was there, but I didn't like to look at. I didn't like to look in the mirror. I didn't like to, you know, be reminded of it. I didn't like to see videos of myself walking or playing basketball or doing anything like that. So I just tried to. Put it aside and say, I'm going to be. I'm going to be me as much as I can and as much as people let me and I'm going to fight when I need to fight the rarity of it. I don't think it played as much a part. If anything, it made me feel more grateful to my family, to some, some really good doctors and prosthetics who helped me. So it made me feel like lucky in that respect that I could still do the things most of the things that I wanted to do. But I think part of the part of the. I lost out in not having other friends who had disabilities, not knowing other people who had disabilities. I was always, you know, the only or I don't remember having anybody else in class growing up with physical disability.
Peta [00:17:24] Yeah, I was the only one in my high school with a physical disability, so, you know, we have very similar life experiences and I don't know whether for me, being the only one was a blessing and a curse in the fact that I could define myself in my disability. Based on what I thought and nobody else was going, Oh, well, actually, this is how you should be thinking, because I had no other example of how I should be presenting or how I should be thinking about life. So in that way, I'm quite happy that I was the odd one out. But in other ways, I probably didn't know when to stand up for myself and advocate for myself when I probably should of. I quite like having a disability because it makes me more unique from the next person. What do you love about having a disability Gustavo?
Gustavo [00:18:27] So this question I have been thinking about all week, and I really didn't know how to answer it, so I finally came up with a good answer today. I love having a disability because people remember me. I am a memorable person and it gives me the opportunity. To make an impression on somebody else. It's like you said before, it's a blessing and it's a blessing and a curse, I choose to see it as a blessing. And it just it opens up so many doors. I just need to have the the courage and the confidence and the willingness to step into those doors.
Peta [00:19:14] If I could give you a magic wand and you could fix one issue facing people with disabilities today, what would that be?
Gustavo [00:19:29] Hmm. So the the my practical, pragmatic side would say economic stability. I think that would be huge. Because it would give people more freedom and. More capacity to explore and see what they wanted to do without having to worry about. I'm unemployed, I'm on disability, I can't, you know, I can't do much. I think health care is also would also be a huge practical thing to provide so that again, people can just live dignified lives. In terms of evolution, right, the first step is to survive. And then there's all of those higher needs that we have as people and we need to start with the disability community with with living right, with having dignified basic rights and basic quality of life so that we can start to excel in all those other areas.
Peta [00:20:39] Well, between many of us in the community, we're all fighting hard to do that, and you're a prime example of that. So thank you for what you do. I truly appreciate it.
Gustavo [00:20:51] Thank you for inviting me on your podcast, it's been it's been fun. Thank you.
Peta [00:21:00] Thank you for listening to my episode with Gustavo Serafini. As I said at the top of the episode, Gustavo also has his own podcast, which I will link in the description. As always, if you could leave a rating and review, I'd really appreciate it. Thanks so much for your ongoing support. And I'll see you next week. Bye.